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#161068 01-30-2013 02:15 AM
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kaykay Offline OP
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my dad has just been back for 12 mnth check after a scc removed from lip..hes had a swelling around the chin area where alot of reconstruction went on,hes been concerned for few weeks now and we all thought it was scar tissue as his 6 mnth check was fine..after a cat scan they came back with a diagnosis ... a tumour that is wrapped round his voice box lymph nodes and tongue organs,and they doubt its operable..and told us to prepare for the worse.from him getting first scan results yesterday hes been sent for pet scan today more tomorrow and then results again tuesday..what the and how the did this happen within a check up 6 months ago and now..please has anyone been or had close to this diagnosis, im unsure of the outcome and scared to death of it...is there a chance of survival with out an operation if it does turn out to be the case..other than slight high blood pressure hes fit as a fiddle at 67

kaykay #161069 01-30-2013 02:38 AM
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Welcome to OCF! So sorry to hear about your fathers recurrence.

Its pretty difficult to try giving any type of prognosis over the internet. The best thing I can tell you is to find the very best medical professionals available and then finding some at a different cancer center for a second opinion.

The treatments to eliminate cancer are either surgery or radiation with or without chemo. If surgery and radiation are out of the question than sadly your father wont be curable. Chemo can be given as a palliative measure to help shrink the tumor and extend his life. But chemo alone will not cure his cancer. Some 'old school' medical professionals will say radiation is only a one time option. But there are several members here who have had it more than once. This is a very individual thing and varies on a case by case basis. If your father hasnt had radiation then I would suggest asking. Even if he has had it ask if a second round is possible.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #161071 01-30-2013 04:47 AM
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kaykay Offline OP
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thanks so much for ur response, he has more tests tomorrow and most of next week,hes of the oppinion tha he doesnt want surgery if it is even possible but hopefully he will change his mind once hes had time to take it all in..the strange thing is he is doin everything normally eating drinking,no signs of anything wrong which is making it harder to take in,is this usually something that grows rapidly or will it take its time before it starts changing his way of life,i guess im wondering which way is the better way of life , operation and sick/uncomfortable/miserable for too long a time(and maybe not get all of it anyway),verses let nature take its course and hope for the best and live what life is left comfortably..

kaykay #161075 01-30-2013 06:46 AM
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Its a very hard decision to make! But until all the test come in and your father knows what he is dealing with and potential treatment plans, its not possible to decide his fate yet.

I walked around with Stage IV OC in 2009. When my doc told me to get my affairs in order as it was very serious and Stage IV, I could tn believe it. I really felt great, lots of energy and had no symptoms at all. Many times OC presents no symptoms until late stages which is why it is such a deadly disease and sometimes so hard to treat.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
kaykay #161078 01-30-2013 08:52 AM
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Posts: 618
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Posts: 618
Kaykay,

Eventually this disease gets ugly and painful. I know that when my recurrence happened I developed severe pain when the tumor invaded a space occupied by a bundle of nerves. One day I'm fine and the next day I am in severe pain.

My brother had a diagnosis similar to your father. He went through surgery and radiation and is good now 1 year out. He still has his vocal chords but speaks with a gravelly voice. He eats soft foods and is working his way up to full meals but does not need a feeding tube.

Your dad will have to wait a bit before they give him a treatment plan and it will be hard for anyone here to give you much advice until then. I would recommend he get a second opinion no matter what they come back with. Different places have different approaches. Try and get to a Comprehensive Cancer Center if you can.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
kaykay #161110 01-30-2013 06:44 PM
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Kaykay

What part of Australia does your father live in? Do you know which hospital or Cancer Centre he is currently attending?

There are several members from Australia on this site. Has he had a second opinion? Perhaps we can provide suggestions regarding Medical specialists in his area.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Karen Rose #161112 01-30-2013 09:34 PM
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kaykay Offline OP
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he is living in victoria,goin to peter mac and has days of tests to go with some results early next week..theyve given appointments for a dietician speech and a range of other things,is this a sign that it may be operable?or will it need to be done reardless..eventually

kaykay #161113 01-30-2013 09:36 PM
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kaykay Offline OP
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also am glad your brother has come through ok...i pray for the same outcome for my dad,thank you

kaykay #161115 01-30-2013 11:50 PM
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Kaykay

Peter MacCallum Cancer Centre is the right place for Head and Neck Cancer patients. Arranging appointments with a Nutritionist, Speech Therapist etc is standard procedure at Peter MacCallum CC. Once they have your father�s latest test results they will probably take the information to a Tumor Board within the Cancer Centre where his case and treatment options will be discussed by Surgeons and Oncologists. Tumor Boards meet regularly so treatment plans are provided quickly to patients.

Hopefully they will decide on a plan for him asap.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
kaykay #161117 01-31-2013 12:40 AM
Joined: Jan 2013
Posts: 15
kaykay Offline OP
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thanks so much,i thought that was the best place to be dealing with him...i pray to god that this is operable,its now just the waiting game..the worse bit

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